Caring for
Someone with Alzheimer's Disease

What is Alzheimer's Disease (AD)?

Alzheimer's Disease (AD) is an incurable brain disease
that slowly gets worse over time by destroying brain cells.
It is the most common form of dementia, and causes a gradual
loss of mental functions such as thinking, remembering, use
of language, and reasoning.

People with AD have symptoms ranging from mild anxiety
and memory loss to agitation, violence, and being unable to
talk. In the very early stages, some people with AD try to
hide their problem. Others, and all who are severely
affected, are unaware of their problem. These behaviors can
pose a risk of physical harm to the person with Alzheimer's
disease and to others. People with AD may not like to be
around other people. Other people may shun those with AD
because of their strange behavior.

People with AD often have sleep problems. They may sleep
more during the day and less during the night. This is very
hard for caregivers because it often results in caregiver
exhaustion from stress and lack of sleep.

What should I do as a caregiver for someone with AD?

Caring for someone with AD calls for extra patience and
understanding. Try to simplify the routine and surroundings.
Minimize the situations that cause the most stress and
unusual behaviors. Although safety is important, encourage
independence of the person as much as possible. Some ideas
are:

Reduce stress by keeping routines and the
environment as much the same as possible.

Do only those things for them that they can no
longer do. People with AD may be able to do part of a
task. Let them do whatever they are able to do
successfully.

Do not tease or argue with them.

Do not let them get overly tired.

Try to limit the number of new people that are
around at any one time. New people increase stress for
some of those with AD.

Watch for situations that may cause unwanted
behavior. For example, crowds and noise may increase
anxiety.

Give choices, but limit the number of choices to
two. Too many choices can be difficult for people with
AD to handle. Choices can sometimes help to channel
behavior. If they resist cleaning up, ask "Do you want
to wipe your chin or shall I?" instead of asking, "Can I
wipe your chin?"

Celebrate what they can do well. Don't focus on what
they can't do. Don't remind them of what they used to
do. Don't try to get them to act like they used to act.
Make time for fun and togetherness in the present time,
even if they forget quickly.

When people with AD can't keep from behaving badly
or are having trouble with self-control, divert them to
something else. For example, say, "Let's do this now,
over here," rather than trying to tell them why they
shouldn't do something.

Listen to what the person with AD is saying. Try to
understand the feeling behind the person's words. Don't
argue with the content of the person's thought.
Agree with the feeling. For example, don't tell the
person that his or her mother is dead when the person is
looking for her. Instead say, "Oh, you miss your mother.
What would you say to her if she were here?" Then
gradually change the subject.

Try to understand their past experiences and habits.
Make current routines as much like the past as possible.

How should I respond to a problem behavior?

Remember that the behavior is a symptom of the disease
and not directed toward you or others.

Who is the behavior is affecting? Is the behavior really
a problem or not? For example, a person talking constantly
to an imaginary person without bothering other people does
not have a problem behavior. However, a person arguing with
another resident or a family member, using foul language, or
hitting other people does have a problem behavior.

Change the way you respond, rather than trying to change
their behavior. People with AD are not aware that their
behavior is inappropriate. The way you respond can have a
calming effect or make the situation worse. Do not argue or
explain what is happening. Divert their attention and offer
reassurance. Use a slow, calm tone of voice. Avoid sudden
moves with your hands or body.

Change any routines that may have started the behavior.
Schedule events to be at the best time of the day for them.
Provide frequent breaks from stressful activities, provide
snacks, or return to a nonstressful familiar activity. Take
them to the toilet on a regular schedule.

Make changes in the surroundings if possible to prevent
the behavior from happening. For example, a person who
wanders may need several types of locks installed on doors
or a bolt put up higher than expected. For a person who
rummages through drawers, provide a specific place (like a
drawer, dresser, or closet) for items that he or she can
rummage through.

Don't expect a prescription for every health or behavior
problem. Your health care provider will try to avoid
medicines that could cause serious side effects. These may
include antihistamines, antispasmodics, medicines to treat
incontinence, and sleeping pills. Medicines generally are
used only when other approaches have failed. Medicine can
make problems like agitation and confusion worse. In some
situations, however, medicine may be the best way to manage
problems such as depression and distorted thinking.

What help is available in my community?

Ask your health care provider about agencies in the
community that provide assistance for caregivers. The local
Area Agency on Aging, along with home health care agencies
and geriatric care management companies provide sources of
information for caregivers. You also can get help through
community agencies such as Retired Senior Volunteers
Program, senior centers, or contact the Eldercare Locator
Hotline at 800-677-1116. A variety of services may be
available such as:

homemakers

home health aides

companions

licensed practical nurses or registered nurses

social workers

therapists

respite care

adult day care centers

transportation services

grocery shopping services

chore services

support groups.

Many churches offer respite programs or other elder care
assistance. Many others would do so if asked. Occasionally,
other older adults can be organized to "bank" volunteer
hours and then draw on those hours someday when they need
the help. Churches and civic organizations in your area may
be willing to start and coordinate these programs if
requested.

The local Area Agency on Aging, which may be called
something slightly different in your area, also has
information about services available. These agencies belong
to a network established by an act of Congress. All get
federal funding and most receive state and local funding as
well. If you have trouble finding the phone number for your
local Area Agency on Aging, call the toll-free Eldercare
Locator phone number, 1-800-677-1116.

Respite care programs provide a break to families who
care for people with AD at home. Services can vary from a
few hours to several weeks. Brief respite care stays in
nursing homes can also be arranged through your health care
provider. Adult day care programs offer care during daytime
hours. This provides respite for the caregiver and different
surroundings for the person with AD. Many communities offer
assisted living or personal board and care homes with
secured units for persons with AD. These facilities provide
homelike, nonstressful environments for small numbers of
persons with AD. Consult your local Area Agency on Aging or
the Alzheimer's Association for information.

What can I do to take care of myself?

Caring for a person with AD doesn't have to be a lonely
experience, although it's common to feel that no one else
understands what you are going through. Family support
groups offer the chance to share feelings with others who
are in similar situations. A support group is made up of
caregivers, family members, and friends of those with AD or
other dementia. Your local AD organization can help you join
or start a support group in your community.

As a caregiver, you need help and support as behavior and
care needs change in the person with AD. It's easy to feel
alone because of the demands made upon you for care and
attention. Support groups can help by giving you a chance to
meet others who have similar experiences. Meetings provide
information but are also social events for you. The
Alzheimer's Association supports these groups by providing
information and referrals.

Topics discussed in support groups usually focus on
feelings about caregiving, ideas to help you, and open
discussions about a variety of issues pertaining to AD.
Caregivers feel more in control of their lives when they
understand more about the disease and learn from others in
the group. The shared experiences and the encouragement
given and received are important functions of a support
group. Explore your community's available resources, such as
adult day care or respite care.

Ask friends or neighbors to stay with your loved one so
you are able to attend your group. Remember, it is as
important to care for yourself as it is to care for the
person with AD.